Week 4: Listening to families; the moon on a stick? #107days

We were delighted with the response to Katherine’s post on mother blaming yesterday and we continue Week 4 with a post from Sara:

On April 13 2013 I made a complaint to Sloven/OCC about the period of time leading up to LB’s admittance to STATT. My main complaint was Overall I felt my voice as a carer for LB was not listened to and as a result the seriousness of the situation was not appreciated. This complaint was largely dismissed by a Sloven internal review. Five weeks later I raised urgent concerns with STATT staff because LB had had a seizure. They’d noticed he’d bitten his tongue but hadn’t made the link with seizure activity. Six weeks later he was dead. [Howl]

I felt my voice as a carer for LB was not listened to and as a result the seriousness of the situation was not appreciated.

Person centred planning is (or should be) at the heart of social care provision (in the same way patient centred care should be central in healthcare), and techniques like Circles of Support are becoming more common. Families are a remarkable resource for health and social care staff. I wrote about this in an article to do with diagnosing autism a couple of years ago arguing that parents maybe the best resource in identifying autism. They typically understand and know their child/sibling/grandchild better than anyone. They love their child/ren and want the best for them. As Katherine writes, they want their child to have the same life chances as everyone else. But this love, expertise, knowledge and understanding is too often dismissed and ignored. Health and social care providers/staff appear to think they know better about the person they are supporting and families are portrayed as problematic.

Funnily enough, we don’t necessarily know we’re portrayed as unreasonable, or worse. It’s only on reading health or social care notes that this may become apparent. After Mark Neary raised concerns about Steven’s clothes disappearing, the social worker famously wrote There’s always something or other with Mr Neary… in an email to staff. Sally commented on my blog last week:

Screenshot 2015-04-14 07.18.15

Blaming parents seems peculiar really and there seems to be little reflection on the part of these professionals to maybe reflect why Mark might want to know where Steven’s clothes are. Or why Sally turned down a particular service. Boxes of records and emails in the Justice shed recount my apparent hostility, refusal to accept the moon on a stick and general flakiness, positions inconsistent with other areas of my life that I seem to manage fine; bringing up LB’s sibs and working full time (although the kids might disagree).

Why aren’t families listened to?
I’ve tried to tease out some possible reasons below. These are early thoughts and there is quite a bit of overlap between the categories.

  1. Basic humanity: If someone isn’t seen as fully human there’s no reason to bother to engage with family members. Much easier to just get on with the task at hand – containment at the lowest possible cost – and exclude pesky relatives who bang on about better care, missing clothes and the like.
  2. Background: By the time the child reaches adulthood, families typically have experienced some fairly full on tough times in terms of accessing support across the years. Adulthood offers little certainty, no imagined future and deep concern about what will happen when parents are no longer around. Not understanding or recognising this background can too easily lead to exchanges that damage relationships between families and professionals.
  3. Black hole of trust: Trust is essential (as it is in healthcare) to the provision of good and effective social care yet it seems to be absent from consideration by social care professionals and providers. Fear is probably the most common emotion I’ve encountered in families I know both personally and through work. The lack of engagement with trust flags up a disregard for the expertise and knowledge families have to offer.
  4. Budgetary considerations: A lack of available resources/provision can mean that family expectations (that people will be supported to lead enriched lives) is so far out of reach that overstretched professionals don’t really want to listen to families. There are no options so it’s easier to ignore increasingly frazzled and concerned family members.
  5. Moon on a stick: There can be a complete disconnect between what families and providers think good care looks like. Providers may think the care provided is good enough and families are unreasonable and/or difficult to turn it down or challenge it.
  6. Capacity misunderstandings/misappropriation: The Mental Capacity Act can be used as a bit of a weapon against families. Partly (I think) because of misunderstandings around the workings of the act but also because it’s a handy tool to bash back concerned families and get on with the containment mentioned in 1.

That’s where I’m at right now but I realise this only scrapes the surface of an area that urgently needs attention. Any comments/thoughts/additions or revisions would be great so we could start to really flesh this out. If any health/social care professionals could chip with their experiences, thoughts and observations, that would be fab.

There may be some fairly straightforward solutions here.

Moon on a stick

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7 thoughts on “Week 4: Listening to families; the moon on a stick? #107days

  1. Yes, yes, yes. As a nurse, and now a mother of 2 (1 with special needs), I wonder if the reality is a complete lack of understanding of the expertise, knowledge and experience mothers/parents/families have both of their child and of dealing with other professionals? Is it a sort of mind-blindness to any others expertise other than that which is “professional” knowledge. I question whether the person-centred approach somehow buys into that mindset and encourages professionals to further exclude mothers/parents/families? My knowledge of both my kids is deep but also instinct-led and therefore not valued as it is not deemed important as it isn’t measurable…
    We ask for help from services/professionals whose focus is “the child” or “the client” and their response is to provide services that take my son away from the family or to offer “respite” which is away from the family. This is an intrinsic part of the service structure with inbuilt assumptions that as a family we are part of the problem.This shouldn’t happen, it’s wrong! I wonder how much individual professionals can do to change this assumption especially against the tidal wave of cuts, lack of resources, inquiries etc etc. Some professionals think they know better because they are “professionals”…

  2. Dear Sara, I think mother blaming deserves a lot of research. I have certainly experienced it,most mothers of kids with disabilities I know have too. I used to work mental health clinics so have seen a little of the other side of the fence. Couple of thoughts.

    There is a huge push to stretch funding by amalgamating teams. The remits of the teams are rewritten to cover things they can’t possibly cover. I have to say people with autism are not at all popular in mental health because there is still little training on how you assess and then work with someone who has ASD and may also have a mental illness. Also everybody knows damn well that once you have sorted out the person’s mental health you are stuck with them because there is no service to refer them back to. At this stage the charities are wheeled out. I have so often had the experience of a team trying to deflect my son’s case and instead rhapsodising about the wonderful things the NAS etc can provide. GPs are also also talked up. Some poor Dr who will see you for 10 minutes is talked about as if he/she is able to devote hours every day to thinking about your child’s care, forming a bond, seeking them out. If you have a realistic idea of what the charity and GP can and can’t do you will probably still push for your kid to be seen by the team. You will be offered a meeting to “explain” the decision not to take your kid on. You will say that you understand what has been said perfectly you just don’t agree with it.

    This leads us to cliche number one: “Stupid parent who is difficult because he/ she doesn’t understand how reasonable and great is what we offer.”

    The next situation is what I call the organ grinder and monkey problem. Parents seldom can just march in with their kids and be seen by teams well qualified to assess, diagnose treat, manage. Often you don’t even know such teams exist. You are offered the monkey- not ASD qualified, not clinically trained by by God we have it to hand so you!re getting it! So you blunder about eagerly , trying to get help, hampered by terrible or no pretend diagnoses by unqualified people and help being offered which doesn’t and can’t work with your kid because it is designed for neurotypical kids. I think it is a great cruelty that parents are subjected to the advice from unqualified people and parenting programs designed for neurotypical people because it is bewildering, miserable, and wastes time .Parents can waste years hopelessly talking to nice Mrs Smith the Health visitor: (“just be firm, dear”) and going to parenting classes.

    The assumption is ,and this is true for even ASD services, if you the parents were doing the right thing these problems wouldn’t be there.

    Cliche two: What we offer always works so if it isn’t the mother is not applying it correctly, perhaps even sabotaging it.

    If you get up the nerve to refuse the general services and press for specialist input you are manipulated by being labelled as: Arrogant- do you think you are above needing to improve your parenting? Neurotic -perhaps you want your child to be like this. Mean -what do you mean you want to be referred to a specialist team? Mrs Jones is a lovely health visitor/teacher and she is VERY EXPERIENCED .how dare you be nasty to Mrs Jones by saying you want something else.

    If your child’s behaviour at home is very difficult to contain, perhaps dangerous to them or you, you come up against a terrible lack of services especially crisis care. CAHMS offer no after hours care. This is galling if they have just advised you to manage behaviour in a way which will escalate it. I used to work on an autism advice line and so many calls came in from terrified parents who had been hurt or their house wrecked by very upset kids with ASD. If they had called the police ,and most did not, the police really could only ask if they wanted to charge their child or perhaps take him or her to hospital. Once at hospital a tired registrar would ask what they wanted to do.If mental illness wasn’t in the picture there was nowhere to go. I recently had a terrible situation at my house. A full awful meltdown with very upsetting behaviour. A team social worker called ,largely it seemed in an arse covering mission, suggesting I come and talk about support. As ever respite was deflected”I will need to discuss that with the team” and I was advised to do relaxation,perhaps put up a notice and hire a carer,, what about a charity football class for my son etc. Anything but her team providing a service. I refused this and asked for respite. She went off. I had a letter saying sorry that I had turned down so much support.

    This is cliche number three. If a parent refuses anything they clearly don’t want help. it doesn’t matter what the refused thing was.

    Final cliche, the sad burden excuse! We all admire you so much for the situation you are in,which is a challenge/ mission/journey (delete where applicable). How we admire you for the great way you manage . Take comfort that this will make you more spiritual, grasshopper. Cue for the parent to look noble and spiritual and with a sad little smile get on with the mission. Translation:”Well, it’s your kid! You created him/her! It’s not for us to make it better! Stop inconveniencing us all, and push off!

    Perhaps we should look at what behaviour they DO want from mothers. We can deduce this from what they don’t, Mothers of disabled children should be very, very grateful. They should accept whatever is offered them in deep gratitude for the gift. .They should uncritically admire practitioners, services and schemes. They should be humble. Any worker in the field knows more than them. Unless services are being refused. Then mothers should be flattered that the service thinks so much of their expertise they are leaving them to do it all themselves. Above all mother should accept that their child’s autism is their problem. If they were good mothers they would not be finding their child’s behaviour difficult. They would either have fixed it or found a way to embrace it and face it with a smile.It is a mother’s job to devote their lives to their children, no matter what this involves.

    I am sure there are difficult parents in the land of ASD. why not? But is is so easy, so very very easy to be presented like that.

  3. Hi Sara
    Just posted a comment but think it got lost while I reset my WP password! So here goes again 😊

    In her book ‘Turning to one another’ Margaret Wheatley says “I believe we can change the world if we start listening to one another again’.
    I’ve been wondering for a long time how I could contribute more to the campaign. As I read your blog this morning your questions led me to think about hosting a World Cafe.

    I used the World Cafe method to host ‘conversations that matter’ when I had an equality and human rights role in NHS Wales. Since retiring I’ve continued to learn more about the method and love hosting World Cafes http://www.theworldcafe.com

    if you like this idea and want to explore it please give me a call. i’ll DM you my phone number
    Pam
    PS oops forgot to say..,….a brilliant blog, ….hugs x

  4. Pingback: Week 4: Deaf Ears and Force Majeure #107days | #107days

  5. I’m going to share this as a little example for hope.

    Yesterday, I was part of a judging panel for a Birmingham City Council scheme which promotes excellent practice in social care and celebrates it – essentially it should create positive benchmarks that other employees can learn from/aspire to. Being external to BCC, I wasn’t sure before walking into the meeting what to expect.

    The process was a lot more interesting because it gave a wider sense of where things weren’t working well in terms of practice or organisation as well as what had worked well. The act of nominating and explaining revealed a wider picture.

    However the nomination that gladden my heart although it didn’t get selected among the winners was a case where the relationship between the family and Children Services had broken down for the reason discussed by Katherine and Sara. The child had spent 18 months in a secure mental unit as a result.

    It was a transition team (from child to adult) taking on the case from Children Services that broke through the impass. They built a healthy relationship with the family, assess the needs of the young adult, identified the placement required and worked closely with the provider and family to ensure a smooth transfer from the unit to the placement.

    The testimony of the mother about being listened to and that they and their child are happy shows that social services can do this stuff properly and with humanity. I was also struck by the provider commenting on the thoroughness of this transition team to making this work compared with other experiences they had.

    Two thoughts I have are:

    1) given the horror stories I’ve read about transition being a cause of problems, it was just a pleasure to hear of transition resolving problems

    2) the benefit of seeing good practice is being able to challenge bad practice. If these practitioners can get things right, why can’t you?

    Yesterday has reaffirmed my zero tolerance of bullshit but has also encouraged me that we can get more humanity and competence into the system.

  6. Pingback: Selective Hearing and Elective Mutism. | Who By Fire

  7. Pingback: Secrecy, transparency, purdah and the illusion of candour #ADASSspring #JusticeforLB | George Blogs

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